Research on COVID-19’s long term effects: Ensuring Black, Indigenous and Latinx communities are not left behind

By Michelle Medeiros, Hillary Edwards and Claudia Baquet.

 Possible long-term effects of COVID-19:

As we continue to learn more about SARS-CoV-2 (COVID-19), there is emerging evidence on long-term impacts. Recent publications identified long-term effects including, but not limited to, fatigue, shortness of breath, cough, headache, chest, muscle and joint pain, fast or pounding heartbeat, loss of smell or taste, and memory, concentration or sleep problems. People who suffer long term effects may call themselves “long haulers” who are dealing with “long COVID-19.”

Who is most at risk for suffering from COVID-19 long-term effects?

Unequal disease burden by race/ethnicity and socioeconomic status has been reported for decades. So, it’s no surprise that COVID-19 disproportionally affects communities of color, further exacerbating health disparities and inequities. A significant proportion of the frontline workers in healthcare, service industries and municipalities during the pandemic are workers from Black, Indigenous and Latinx communities, putting them at greater risk of exposure to COVID-19. Black, Indigenous and Latinx communities also have a higher prevalence of comorbid conditions such as hypertension, cardiovascular disease, diabetes, and asthma, which increases risks related to COVID-19, and may lead to delayed recovery and prolonged symptoms. Additionally, communities of color are experiencing increased rates of COVID-19 related hospitalizations and mortality rates as compared to white communities. Unless clinicians, researchers and policymakers directly address the underlying disparities, the disproportionate burden will further divide the long-term impacts of COVID-19 across racial and socioeconomic lines.

Will history repeat itself for Black, Indigenous and Latinx communities when it comes to “long COVID-19”?

The full extent of conditions related to “long COVID-19” has yet to be determined. To complicate matters further, the medical arena has yet to reach a consensus on what qualifies as “long COVID-19” or how to treat it. Nonetheless, long term effects specific for Black, Indigenous and Latinx communities on physical health, mental health and social determinants of health need to be addressed directly. The lack of inclusion of communities of color from the planning and implementation processes leaves these communities looking at a double edged COVID-19 sword. On one side is the unequal suffering and mortality from the disease. On the other side is the long history of medical abuses in communities of color, which has led to widespread distrust and lack of trustworthiness of health care professionals and researchers. These transgressions are coupled with a healthcare community often ranging from unwilling to unaware of how to provide culturally competent care to those most in need.

Recommendations for inclusive planning and implementation

Where do we go from here? Efforts are underway to better understand the long term effects of COVID-19, which includes the development of clinics and centers specifically dedicated to treating and evaluating COVID-19 long term effects. The current challenge is to design research interventions in a manner that meets the patients “where they are” – physically and mentally – and learn how to incorporate it into clinical models of care. One effective model is to track patients over a prolonged period of time. This method is often accomplished by building registries and following patients for several years to learn how the post-disease sequela may progress and how the disease effects overall health and well-being. Long term effect registries will house valuable data that, if properly maintained and equitably shared, could serve as an integral tool in understanding, treating and possibly mitigating the severity of COVID-19 long term effects.

It is critical that affected communities, relevant stakeholders and leaders review and provide input into the planning and implementation of these registries now. The novel nature of the virus and disease demonstrates the need to proactively plan for surveillance, reporting, and care.  It can ensure Black, Indigenous and Latinx communities are not left behind compounding further historical and underlying equities due to COVID-19 by including them as active participants in the decision-making process.


Author: Michelle Medeiros1, Hillary Edwards1, Claudia Baquet1,2


1Department of Pharmaceutical Health Services Research, University of Maryland Baltimore, Baltimore 21201, MD, USA.

2HOPE Institute LLC, Columbia, MD, USA.

Competing interests: None

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